Children
with autism spectrum disorder (ASD) can develop symptoms before 2 years of age
and usually can be diagnosed by 3 years of age; early identification of ASD is
associated with improved long-term developmental outcomes. In a new study scheduled for publication in The Journal of Pediatrics, researchers
assessed how healthcare providers respond to parents’ concerns about their
child’s early development, as well as how that response affected the timeliness
of ASD diagnosis.

Katharine
Zuckerman, MD, MPH, and colleagues from Doernbecher Children’s Hospital Oregon
Health & Science University and Oregon State University used data from the
2011 Survey of Pathways to Diagnosis and Services, a nationally-representative,
parent-reported survey, to examine the experiences of 1,420 children with ASD
and 2,098 comparison children with nonspecific intellectual
disability/developmental delay (ID/DD).
According to Dr. Zuckerman, “We know that early identification of ASD is
beneficial to children and their families.
Unfortunately, many families experience long delays between when they
first have concerns and when their child gets diagnosed with ASD.” So, the authors recorded the child’s age when
parents first had concerns about development, the child’s age at first
discussion with a healthcare provider about the concerns, the provider’s
response to the concerns, and, in children with ASD, age at diagnosis.

The
researchers found that parents first had concerns about ASD at about 2 years of
age, compared with ID/DD at about 3 years of age; they discussed these concerns
with healthcare providers at an average age of 2.3 years (for ASD) and 3.2
years (for ID/DD). Children with ASD had
14% fewer proactive provider responses to parents’ concerns than children with
ID/DD, meaning that providers were less likely to take steps like conducting
developmental tests or referring to a specialist. Children with ASD also were
more likely to have their provider reassure parents or tell them that their
child will “grow out of it.” When the
researchers compared children whose providers were more passive and reassuring
with children whose providers were more proactive, they found that children
whose providers were more passive waited longer, as much as 2 years more, to diagnose
ASD. Overall, children were not
diagnosed with ASD until approximately 5 years of age, almost 3 years after
parents first voiced their concerns to healthcare providers.

Despite
evidence suggesting that parental concerns strongly predict developmental
issues, including ASD, there continues to be a long delay between initial conversations
with a healthcare provider and diagnosis.
“This study implies that the behavior of healthcare providers is likely
a very important factor in delayed autism identification,” notes Dr.
Zuckerman. Providers may need more
education and training to address and react to parental concerns, especially for
ASD. Care coordination in the primary
care setting may be helpful to ensure that children with ASD receive a timely diagnosis
and early therapeutic services.

About The Journal of PediatricsThe Journal of Pediatrics
is a primary reference for the science and practice of pediatrics and its
subspecialties. This authoritative resource of original, peer-reviewed articles
oriented toward clinical practice helps physicians stay abreast of the latest
and ever-changing developments in pediatric medicine. The Journal of Pediatrics
is ranked 6th out of 117 pediatric medical journals (2013 Journal Citation Reports®, published by Thomson
Reuters). URL: www.jpeds.com

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